RSD Heroes » living with pain

RSD Hero – Sarah – A Normal Teenage Life With Pain

Emily — Fri, 14 Nov 2008 14:07:07 +0000

It’s important for other teenagers and young adults to know that there are others out there who have RSD / CRPS and who are doing their best to have a normal life.

Sarah is a sophomore in high school at a boarding school in North Carolina who dreams of “one day monopolizing the broadway stage.”

If you read through her blog, A Normal Teenage Life With Pain, you will get to know Sarah and know that her dream will come true!

After you read about Sarah’s experience with RSD CRPS, please take the time to sign her petition to the U.S. Surgeon general to fund more research about RSD.

The Petition to fund RSD research was established by Sarah to help everyone who is suffering from RSD and chronic pain.

Sarah also has a good list of YouTube videos about RSD / CRPS that you can send to your friends and family that can maybe help explain what you are going through.

Best wishes to Sarah and look for her on Broadway!

RSD Hero – Tonya Symonds

Emily — Fri, 24 Oct 2008 21:19:23 +0000

Tonya Symonds is a 23 year old who has recently been diagnosed with Complex Regional Pain Syndrom (CRPS) or RSD.

When she was 12 years old she was diagnoses with fibromyalgia by doctors at Emory University Hospital in Atlanta. When she was 15 she noticed that the pain was becoming more frequent.

Tonya who lives in Bermuda has been able to find relief from the pain by doing physical therapy in a swimming poo where she performs a variety of stretches and exercises.

Tonya’s hope is to overcome the pain so that she can continue her studies. She is looking for an indoor pool in her areas to continue her physical therapy.

RSD Hero – Kayani Turner University of Illinois Volleyball Player

Emily — Wed, 15 Oct 2008 12:26:22 +0000

Senior volleyball player Kayani Turner has returned to play for her University of Illinois volleyball team after missing more than a season while battling RSD/CRPS.

Kayani Turner’s fight with the excruciating pain associated with RSD began in 2005 after acquiring a stress fracture in her left leg. The injury healed, but during the 2006 volleyball season she began to experience severe pain in the same leg. Everyone immediately suspected another stress fraction, but X-rays and MRI did not reveal that this was the case.

“In medicine, it’s something we call a diagnosis of exclusion,” said Dr. Jerrad Zimmerman, the team physician. “Before we could come up with a diagnosis of complex regional pain syndrome, we had to rule out anything else that could cause it. It can take months to diagnose because of all the testing it takes to rule out other possible etiologies of her pain.”

As her doctor explained, with CRPS, in very basic terms, even though an injury has healed, some of the pain fibers never shut off and continue to send signals to the brain as if the injury is still present. In Turner’s case, the pain she experienced from RSD became more intense than the pain she experienced from the original stress fracture.

The RSD took playing through pain to an unimaginable level, but Kayani Turner continued to play during the 2006 campaign. Read more about Kayani Turner’s amazing comeback.

RSD and You

admin — Tue, 14 Oct 2008 13:47:01 +0000

There are many good resources on the internet where people are willing to share their experiences with RSD and offer help and inspiration.

One of these is RSD and You.

RSD and You is an online support group that was started to help people with RSD/CRPS find hope, courage and strength through interaction with other members, positive communication, creating a solid support system and friendships that will motivate you and challenge you to truly live positively with RSD.

Children and CRPS

admin — Sat, 30 Aug 2008 01:21:14 +0000

According to the National Pain Foundation, although the actual prevalence is unknown, CRPS is not a rare disorder. According to the Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA), CRPS may affect millions of people in the United States. Unfortunately, because symptoms vary so widely many people are not quickly diagnosed with CRPS.

Occurrence In Children

In children, the syndrome occurs in girls four times more often than in boys. Average age of onset of CRPS / RSD is 12.5 years. Most children with CRPS type I are from upper middle class families and are athletic.

A typical pediatric patient with CRPS type I is a female who participates in ballet, soccer or gymnastics. Researchers have hypothesized that there may be a genetic predisposition to CRPS type I.

Hyperbaric Oxygen Treatments for RSD / CRPS

admin — Tue, 26 Aug 2008 22:28:46 +0000

Keith Orsini is a 34 year survivor of CRPS as well as one of the Directors and Founders of RSDHope a non-profit organization that promotes the awareness of RSD/CRPS.

In Keith’s personal blog, ‘Pain is A Four Letter Word‘, Keith continues to recount his experience with Hyperbaric Oxygen Therapy. Keith notes that CRPS patients have been seeing success with these treatments.

Best wishes to you Keith!

Coping With RSD CRPS

admin — Mon, 23 Jun 2008 02:00:41 +0000

Blogs and Information about coping with RSD/CRPS:

alternative ways of coping

ARTICLES or QUESTIONS DEALING WITH RSD/CRPS : alternative ways of coping. Stats : 5 Replies.

Complex Regional Pain Syndrome (Causalgia)

EEG Biofeedback, various forms of psychotherapy, relaxation techniques and hypnosis are adjunctive treatments which assist coping. Ketamine Therapy: Ketamine, a potent anesthetic, is being used as an experimental and controversial …

What Life With RSD is Like

Life with RSD is a challenge which teaches coping skills. Life with RSD is hard for those who witness me live with it too. Life with RSD is not a death sentence. Life with RSD is an opportunity to do some good, even if I don’t know how …

RSD self help tips…

H) Understand that some of your friends may drop off along the way or have a difficult time understanding and coping with your disease. This is not because you suddenly have become a bad person. Try sharing some basic information with …